It’s not just you. Your life really does have a soundtrack, and the right songs will continue to play at the right time…
Tuesday, May 22, 2012
Letter to Your Younger Self
It’s not just you. Your life really does have a soundtrack, and the right songs will continue to play at the right time…
Friday, May 18, 2012
"Til next time. Take care of yourself, and take care of each other."
This morning, I received an email that we had lost one of our own. A fellow advocate, who was in her mere 30's had passed away. Katie Beckett changed lives for so many families. I didn't get to know her well, but we had been at many of the same conferences, and I know her mother fairly well. I won't pretend I knew her well, but hearing of her passing hit me hard. She was an icon for the young people of my generation with special health needs.
Shortly after hearing that, I had a great, intense talk with the captain of Team Boston. We talked work, and housing, and what I am not willing to sacrifice to make this possible. And that is my dignity, and my inclusion. I have come this far, and I will not go backwards.
I will accept the grad school lifestyle, and eat ramen, and not go out, or take trips, and live in a studio apartment with minimal space. What I will not do, is be forced to live in SEGREGATED housing, because we need a building with no stairs, and a shower that is safe for us to use. I am paying 60,000 a year to pursue my master's degree in a program I was accepted to, in an esteemed institution, so I will not be isolated, and segregated from my community of peers who are doing the same thing. He accepted this, and we are making it happen, with a lot of work, communication, and determination.
After that, I came home, and was able to download videos taken by another incredible Bostonian. And it's out there. We have found an apartment that is ultimately accessible, and nice! And actually within a reasonable budget. Of course nothing about grad school or Boston is "reasonable." but it is far more within our range than paying $2000 a month for something that is not accessible. At all.
Now comes the tough part, where we really make it work, and the money meetings, and talking who gets my time when I'm in school....
And Owen is working with people in Boston who want to meet with him to "figure something out" in terms of work! Hopefully they can work with him not quite being there yet!
But it IS happening, and I have to believe, that perhaps my "connections" are not just on this earth.
Thank you Katie, for all you have done, for us, for others, and for making us realize the importance of continuing this journey.
I leave you with something that I didn't write. But that, it sounds like I could've.
Read it here
Amen sister. You said it.
Sunday, May 06, 2012
I can haz transition?
After I finally got to DC (after missing my flight, staying a night by myself in Portland, and being rebooked by the angels at US Airways) I took a nap, showered, got out of my punch drunk tired state of mind, I went with Owen to one of the plenary sessions where they talked about the demise that is our Medicaid programs, and how we need to defend the community approach vs. institutionalizing people with disabilities. My heart sank, but my ears perked. This is exactly what we’re also talking about with transition, and that I have been proving for my own case for many years. I started thinking of all the people I knew who had they not had the level of family and community support they did, would be in nursing homes. Oh, you know, like me. That flame inside me flared.
Friday, April 13, 2012
Let it Grow
Silly maybe, but see the movie… preferably before the election.
Thursday, April 12, 2012
The Epic Adventures of 2012!
Saturday, December 03, 2011
Tuesday, October 04, 2011

I'm sure everyone remembers that wildly overplayed song by B.O.B and Hailey William's, "Airplanes?" I could really use a wish right now.
I used to get really annoyed with that song and say, "Oh stop sitting around wishing on things that are not stars, get out there and get stuff done and it'll all work out."
But as I write this entry, it's completely stuck in my head, and ya know.... sometimes... maybe it's ok to "really need a wish right now."
...and sometimes. The right people find out....
Earlier this summer, I discovered an incredible organization. It’s called The Sister’s Wish, and the purpose is to grant “Wishes” for young adults from ages 18-30 who have life threatening or terminal illnesses (and live in ME, NH, or MA).
Most people know about the many “wish granting” organizations for “sick” children, that send kids to Disney before they may not have the chance anymore, or things like that. What a lot of people don’t know is that once those children turn 18, the magic, and wish granting tends to come to a screeching halt. Doing all the work that I do, this is why the field of transition is such a hot topic right now. At the (less than) magic age of 18, legality changes, financial situations change, eligibility rules change, and often times, services that seemed consistent, all of a sudden may not even be available. In lots of cases, being legally an adult when you have a special health need is a series of struggles and figuring out where to go next. To put it quite bluntly, you are no longer “the cute sick kid” that everybody brought stuffed animals.
So when that scary point of adulthood hits, it's often a matter of just getting your daily needs met, and it is not common that people come along and ask “what do you WANT? What can make your life easier, or maybe just a little brighter? How can we make you HAPPY?” But, this is exactly what the amazing people at The Sister’s Wish do! 
When I first heard about them, I not only thought that was incredible, and got a little weepy over some of the stories posted on their website that explained some of the wishes they had granted, but I forwarded the information to one of my colleagues who works with Next Step, a spin off program of camp (again, for young adults who have outgrown that source of fun and hope…) I said, “this sounds like something that is for our population. Have you heard of it?” Ready to hit the ground running, spreading the word about this incredible idea. Shortly he wrote back and said, “Mal… those are the Turgeon sisters… their brother was Craig. That IS our population.”
After having a mini meltdown of how small the world is, and how many GOOD people I have come across through my life, I realized he was right, and indeed these were the sisters of a young man I went to camp, and college with. I didn’t know him well, but my family had also known their father, and any connection to camp just makes all of our hearts swell. I quickly wrote an email explaining my connection to them, the work I do, and how I just really wanted to support their mission.
Soon, I was chatting with Beth on the phone and she invited me to a fundraiser on the Casco Bay ferry to meet everyone. It was a lovely afternoon, we had delicious pizza in Portland and I got to see what Sister’s Wish was really all about. I also got to meet local rap artist Spose (http://youtu.be/KgxT5a0Vmeo he really is pretty awesome, and once again…we knew a lot of the same people. Oh hey Maine)
After this event, they told me I should apply for a wish? ME? I didn’t imagine I would be eligible for something like that, and moreover, what would I wish for? Think about it! When was the last time someone asked you “what do you wish for?”
It was a striking moment for me when I realized…. “You know. I am so fortunate and it is crazy to say right now, I am in a wonderful place in my life, and can’t think of a darn thing I need to fulfill me right now.” Wow.
Then I realized this wish was not going to be for me. I had done my time, I had had my journey, and although it goes on, it was time for somebody else to be rewarded. My little sister, Maisy.
She was going off to college and drastically needed a new computer. She is one of those people who has always gotten hand me downs. Gadgets, clothes, etc. And not once would she ever complain about what she has. However, over the past few months I had watched her grow into an incredible young woman, leader, self advocate, mentor, who simply dove headfirst into the process of applying to college, following her heart more intensely than I had ever seen. She deserved this.
I explained my idea to Beth, and we decided to make this happen, and even better, make it a surprise! This wouldn’t be easy as we would have to convince Maisy to come home for a special fundraising event to present it to her AFTER she went away to school (in New Hampshire nonetheless. But we did it! I was able to get her to fill out the application with her own words, and get her home without her even knowing!
When the day finally came, we all piled into the car (I had a terrible cold, and Maisy was exhausted from school. She even asked me the night before, “If I get sick too, do I still have to go to this thing?” ….yes. You do.) and arrived at the ice cream store in Sanford Maine. There was a wonderful crowd, great music, ice cream, and amazing French fries (I have a thing for French fries, ok?) When suddenly, the music turned off, and they called Maisy’s name to go up. She thought she was simply dragged along because I was speaking, and had no idea why she was being called up.
I stood with her as Amy and Beth presented her with her new Macbook Pro and explained how we had planned the whole thing. Then they told me, because of what I had done, I got a wish too! Maisy cried, we all hugged and took a bunch of pictures, BECAUSE WE ARE ALL SISTERS!!!! Sisters’ wish for sisters!!!! It was a terrific afternoon, wishes were fulfilled… and now…
I am back to the drawing board! I suppose I can think of something!
What would YOU wish for : )
OR do you know a young adult who would love to have a wish granted? Check out their website, and have them apply! Spread the word about this amazing group :)
Friday, September 02, 2011
(post dated- 8/28)
So there’s this hurricane…
The power’s back, but cable isn’t. Everyone is napping, since we mostly don’t remember how to interact without being able to fall back on internet access. But sleep and I have not been getting along so well lately, and I figure what better opportunity to write than right now, where it’s just the sound of my keys, and the wind and rain (hey tree… please don’t come through our sliding glass door. That’d be a total buzz kill)
I feel like so much has happened, and yet, not a whole lot has changed. Maisy is leaving in a matter of days, and that’s sort of just sinking in for both of us. Last month we had our first sister solo adventure that we have only been talking about since she was like 12! We took the train into Boston for the Britney Spears/Nicki Minaj concert.
All you haters can just stop right there. They are two very talented women who have had some rough times and have come out on top. Much like some other people I know…
There was also a crazy surprise as Pauly D opened for them. Judge away, we did, but man it got the crowd going, so rock on Mr. Delveccio.
Not only was the show jaw-droppingly amazing (literally, my mind was blown. What an experience) but it was just so good to have my sister all to myself for 2 days. We did everything girly, with no agenda, spoiled ourselves with room service after the show, and even met up with one of our loves from camp (you’ll see this is a pattern). It was just perfect. And I think we have convinced ourselves that perhaps the Cyrs can travel without tragedy striking!
Now I’m getting ready to send her off to college, and only is she going to a wonderful school with wonderful standings, but she is also already taking time off to go to DC for an anti-bullying summit with the feds, and may speak on a panel. I could not be more proud of her for everything that is about to come her way. It does feel like just yesterday she was a little girl riding behind me on my scooter, now we’re both flying back and forth to our nation’s capitol to tell people what’s up. Eat your heart out Kim & Kourtney, Mal and Maisy are taking DC.
I know she’ll do so well in college, but I can’t help but have so many mixed feelings as I know the ups and downs that will come with it. I know she is a smart girl, but to have to relive all the mistakes I already made once…. Oy vey…. I feel old already. But kudos Miss Maisy, the world is yours and I (and I know you’re entire family and following) is SO proud of what you have become, and all that you will do!
In other news, my life is simply speeding along as it tends to. Although I thought September would be mostly spent at home, I am excited to be invited to a 3 day training in Atlanta on cultural and linguistic competence. This is with the same group that I happened to shut down Disneyland with, so I’m excited for everything about it!
Last week, I also went to our actual home base for Got Transition? And was able to have some face-to-face time with the core team. Granted, I could do an entire blog about the pros and cons of working from home, but this was definitely an important opportunity. I got to meet people I had never even met before, be in the same room as my colleagues for several conference calls, and meet our graphic design/marketing team (the stuff I really get excited over). It really jazzed me up to sink my teeth into work this fall and find new ways to take transition to a whole new level (stay tuned for our sure to epic radio show coming at the end of September… Khloe After Dark, you have met your match).
I like to think of fall as a fresh start, even if I am not physically going “back to school,” so I feel really good about where things are at. Grad school process is slowly moving forward, and I’m hoping to have some interviews in a couple of months. Camp gala is in September for my dose of musical theater, and the glamorous side of camp…
Then comes October! Which… is going to be a ball buster, but I’m so excited! October and March have proven to be my killer months but it’s what keeps me going. In October we have:
Reno (more than likely) for non-work related business that will make happier than any other trip in the near future, shortly followed by Denver, for our Learning Collaborative, and maybe some long distance bff catch up, DC for maybe grad school interviewing and our last session with that learning collaborative… then a weekend who knows where… and then, bam, almost Thanksgiving!
To say the least fall is not looking so bad this year…
Lots going on, change is in the air (literally) and I am ready to jump into this new beginning feet first!
Friday, July 29, 2011
Happy Friday
YFRF- JULY 2011


















